How much of work is involved in PEG. Is it quite painful though. please advice.

Roma,
I was going to stay out of this discusssion but I am also one who went through radiation, no chemo, without a PEG tube and did not need any hydration. I only lost 4-5 llbs but I weighed 122 and am 5'5". Other than having my 16 rear teeth removed, I had no surgery or sores in my mouth. By week number three I was living on Ensure Plus. My RO didn't think I needed a PEG tube.

I have also had the nasal tube after my surgery in 2001 and if I would need a tube during radiation, that is the one I would choose. Very few people are able to do radiation AND chemo without a PEG tube but if he is determined to go it without, the nasal tube is a backup if needed only for a few weeks.

Take care,
Eileen

Since you seemed confused as to what is the right decision regarding the "PEG" I will put my two cents in. I try to stay out of these "discussions" because people try to defend their position and it sometimes gets heated.

When my husband's RO first mentioned the PEG, my husband said "no way, I am determined to make it through being in control and won't need one". My husband's RO said he has only had a couple of people make it through treatment without the PEG and they all were eventually hospitalized due to malnutrition or dehydration. He said once we get treatments started we do not want to stop mid-stream to have to put a PEG in. My husband agreed to the PEG but said he would just flush it and not use it. That lasted about three weeks and then he could not eat or swallow enough to keep up with what his body needed. Even with the PEG in he lost 30 lbs.

He only had the PEG in for a total of 4 months and did continue to make himself swallow water and other liquids throughout the day. He never had any problems after treatments with eating again by mouth. All three of his doctors - ENT, RO and MO all insisted that he get the PEG. They said that the treatments were brutal and that your body needs all it's strength to fight.

There are no heros only survivors. Making it through treatments without a PEG doesn't make you stronger or more of a man. My husband NEVER took any prescription pain killers during or after treatments. I don't remember him getting a medal for that either. I just felt you should hear both sides of the story. Good luck with the decision.

Roma,

I think if you have a good "Treatment Team" that you should follow their advice and probably do it the way they recommend, but it is wise to learn all you can, ask questions and challenge anything that seems questionable.

After my PEG was installed, I was under the care of the Hospital's Nutrition Center, then after a week of RT I was switched to care of the CCC's Nutritionist until the PEG was removed. I had appointments with a nutritionist once or twice weekly.

My liquid PEG diet was provided (Nutren 1.0 @ 250cal/can).

I asked about the Carnation 560, but was told it was too thick for direct PEG feeding (needs thinned down) and orally they preferred the Carnation 325 or a 250 calorie product to help assure that we are getting enough liquid to prevent dehydration.

I never had much of a problem drinking, but many people do and that can lead to dehydration very very quickly, So if your husband goes without a PEG and uses the Carnation 560, you have to be sure he also drinks enough fluid.

The Carnation 560 might save some cost, but it really won't minimize swallowing because he will also need to drink enough to consume around 72oz of daily fluids (check with his nutritionist for his actual requirements).

Also keep in mind that a PEG can not overcome nausea, but it might help with taking the meds to control it. Nausea can defeat the PEG and lead to dehydration and weight loss. I was so nauseated during my last week of RT that I couldn't even hold water down and within less than a week I ended up dehydrated and needed two re-hydration IV's.

Roma,

Another thought from me... the PEG is a tool, much like a computer or a power drill. Yes, I had one and yes, I needed one. And no, I didn't become addicted to it or keep it for years or months after my treatment had ended. As a matter of fact, I did everything I could to get rid of the damn thing. But it served me very, very well and if I ever have to do it again, I'll get another one. Yes, there was discomfort getting it placed (and even more discomfort when it pulled out slightly and got lodged in my abdominal wall) and yes it hurt when I finally had it removed but it made getting through treatment that much easier.

Yes, I can drive a screw by hand but why wouldn't I use an electric driver if one is available to me, ya know?

The peg is absolutely vital if you wish to maintain your body for this fight.Insertion part way along is not an option.It takes 5 minutes for the doctor to insert and 5 seconds to remove.Mine allowed me to supplement feed and although I lost 20 odd pounds I was is good shape for the fight.Don't forget to keep a positive mental attitude also

My thoughts are that you all seem to have made the Peg decision. I had no choice and due to a previous surgery, I wasn't a candidate for this. I say do what is needed to maintain your body and mind as close to normal as possible. It's funny what a good mind can do for the rest of your body.

Sometimes there's another side to getting a PEG "just in case" as set forth in this post by a new OCF member who went that way
Peg problems

Thank you all for providing valuable information.
@ EzJim Yes we have made our decision to go with PEG. Tomorrow they it will be done.
Thanks Charm I will read up your post regarding PEG.

My husband after brushing his teeth, cleaned his tongue and it scraped/ peeled, last night there was blood. i will ask the doc tomorrow about it. I have told him not do that anymore and brush softly.

Please advice. Is it normal to experience it.